preemies

Tristin | 30 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

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Tristin

30 Weeks

3 pounds 4 ounces

Just as his parents were preparing for his baby shower, Tristin surprised them with a speedy arrival much earlier than they had anticipated. Since he was about 10 weeks early, he earned himself a stay in the NICU to do some more growing and to develop a few more skills before leaving the hospital and heading home. Since his NICU admission he has proven to be quite a little fighter and is making great strides in his development—no longer needing an IV and breathing mostly without support. The snuggles and skin-to-skin time are surely helping both Tristin and parents to adjust and to thrive. Just look at those smiles!

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I found out I was pregnant when I was 5 weeks (in June).  I had just graduated from the University of South Carolina and  just received a job here in Charlotte at Charlotte Latin School. I was terrified and had no clue what I was going to do. I had no other choice but to make the most of my situation and my pregnancy. Fast forward to December, I was preparing for my baby shower to be on December 7th. On December 1st, at about 3:30 am, I began having sharp pains in my stomach. I honestly thought I had food poisoning from Thanksgiving. I could not sleep and was in excruciating pain. I finally decided to go to the hospital around 7 because I hadn’t felt a lot of movement along with my stomach pain. I got there and they told me I was 4 cm dilated. They gave me medicine to stop it, however, the meds did not work. Next thing you know, they told me I was 7-8 cm dilated and my baby was coming right then. My boyfriend and I looked at each other and didn’t know what to do. Tristin Joshua Lewis was born on 12/1/19 at 9:16 am. He weighed 3 pounds  4 ounces. All I could do was cry because he was so small. He was transported to Novant Presbyterian right after he was born. He is now 3 pounds 6.7 ounces. He is breathing on his own (room air trials) for 18 hours of the day. He had is picc line removed and he is done with all fluids he was receiving. He is a fighter! He’s doing everything he’s supposed to be doing and I couldn’t be more proud of my little trooper. Being a young parent is not easy. Being a parent already is not easy, but I wouldn’t trade this feeling for the world. Tristin lights up my world and never fails to put a smile on my face. He is my SONshine! Babies are blessings. I am beyond thankful to have Tristin in my life!

Penelope | 26 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Penelope

26 weeks

1 pound 0.09 ounces

Penelope’s parents are not strangers to parenting, but they knew even before her birth that Penelope would need some extra special care upon her arrival. Her mom and dad are currently balancing care for their other children with time with Penelope in the NICU. Between daily life at home and commuting to and from the hospital, life can really fly by. Being a photographer herself, Penelope’s mother wanted to capture her daughter’s feisty personality during her NICU stay, so she welcomed a NICU session for her sweet little lady. Bundled up next to her very first octopus, here is a glimpse into the NICU journey of this little fighter and her loving parents as well as a note from her mother about Penelope’s diagnoses and how she made her grand entrance into her family of five.

We found out we were expecting and were going to do a water birth until all these unexpected things kept coming up. [There were] multiple doctor appointments with fetal medicine and cardiology. We first found out our little girl would be born with cleft—once we got settled in knowing that, we had a cardiologist appointment and we found out she had hole in [her] heart in two different spots. So being scared we put it in God's hands. We knew He could work miracles. Pregnancy was going pretty smooth other than that until 25 weeks my water ruptured and I had to rush to ER and they had to stop labor. They were able to keep baby in another week but then a turn for the worst her heart started to decel. We had to deliver 12/19/19 and she came out crying and doing great on just CPAP.  Two kids at home…and traveling everyday to Charlotte to make sure I'm with my sweet Penelope too it's crazy and a roller coaster, but God is amazing and He works miracles.

Jude | 25 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Jude

25 Weeks and 1 day

1 pound 13 ounces

“I found out I was expecting Jude on Dec. 14th, our second baby (we have an almost 4 year old daughter, Isla). We were over the moon and told Isla she was getting a baby brother for her birthday (I was due Aug 21 and her bday is Aug 27). Up until 24 weeks, I had a textbook pregnancy but at 24 weeks 0 days I was admitted to the hospital because of leaking fluid. Lots of tests later and I was put on bedrest due to cervical insufficiency. It turned out my water had not broken but my cervix had dilated. My team of OB's and maternal fetal medicine told me I would most likely deliver within 24-72 hours.

“I remember having a conversation with my OB the second night I was on bedrest. She told me I was in a very grave position but if I could make it to 25 weeks the difference in gestation and development would be huge. So then my goal became 25 weeks; at 24 weeks 3 days my water broke and once again I was told I'd deliver within 48 hours but it didn't happen. Unfortunately a few days later, I developed an infection and Jude was born a week and 1 day after I was admitted. I'd made it to 25 weeks!

“Like any preemie parent, my husband and I were terrified. We had no idea what the weeks and months ahead would hold and seeing our sweet baby hooked up to so many monitors and medical devices was heartbreaking. We visited daily and on day 10 I was finally able to hold him. We have kangarooed every day since except for two days around the time Jude developed an infection (urosepsis). Jude is truly a miracle and has impressed us every day of this journey. We are so very blessed to be his parents.”

Here are a few shots of the ‘little fighter’, Jude in his first home, the NICU. He eventually made it home with Mom, Dad, and sister Isla!

Caroline | 27 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Caroline

27 weeks + 3 days

2 pounds 14 ounces

Caroline was born premature and spent a bit of time in the NICU. Her onesie is an ode to the incredible NICU nurses she met along the way. Caroline’s parents definitely have a magic touch and managed to take a temperature, change her diaper, and pose for some sweet family photos, all without waking the baby! She did give them the sweetest smirk though!

Look how tiny she looks in her daddy’s hands! She’s already got her parents wrapped around her little preemie fingers—and toes!

Sarah | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Sarah

24 Weeks

1 pound 6.6 ounces

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I was able to photograph Sarah on her day of discharge. In the NICU, we call this ‘graduation day’, which is why you see Sarah sporting the sweetest pink graduation cap.

Sarah is also pictured with her journey beads. The journey beads symbolize Sarah’s strength and endurance through the triumps and trials of the NICU. More specifically, each bead represents a procedure Sarah endured. Do you see all of those beads? That is a testament to the strength of Sarah and her family through their NICU journey.

While you see these bright-eyed photos of a family at the end of their NICU journey, Sarah’s mother beautifully recapped the start of Sarah’s life as a 24-week preemie and provided some words of wisdom for other NICU families.

Our journey to parenthood has been a very difficult one. Last October we found out that we were pregnant after 5 years of trying. We had been through a few years of fertility treatment and were finally able to complete an IUI cycle. When we got the positive test, we just held each other and laughed and cried tears of joy. We were both cautiously ecstatic as we knew this was only the beginning of a long road to a healthy baby in our arms. At our 18 week ultrasound we found out we were having a little girl but we also found out that my cervix was a little short. We started treatment for that and went back a week later, but they did not want to do anything additional just yet. We went back again one week later at 20 weeks and had to have an emergency rescue cerclage that day. I was counting down every day to that 24 week mark because I knew that gave my baby a chance at life. Everything seemed to be going well until my water broke in a bloody mess at 22 weeks & 6 days. I was devastated because I thought for sure that the baby we had always dreamed of was going to die.

She was born at 24 weeks on the dot amidst chaos as her daddy almost didn't make it to the hospital to see her be born and the NICU team was running into the doorway as I pushed her out into the world. Her birthday was nothing like we imagined it would be...it was exciting and we were full of joy but it was all overshadowed by immense and overwhelming fear and anxiety knowing that her odds were not very good at having a quality life, if she lived at all. It was the best and worst day of our life all rolled into one.

Her NICU stay has been our most difficult journey yet. She has battled with her lungs, she has had pneumonia twice, she had sepsis twice. There were a few times that we were told, it's up to her if she makes it or not now, there's nothing more we can do. There were a few days where we really didn't know if she was going to make it. It has been full of tears and heartache. But it has also been full of little wins, and triumphs, and joy/pride in watching her grow. She is a true miracle from God....our baby girl was meant to be here and she has fought to stay here.

Over this whole journey the biggest thing I would want other parents to know is to take it one day at a time. My husband and I have made this our new life motto...and that is how we survived. ONE DAY AT A TIME. Focus on today's challenges/worries/joys and don't get overwhelmed by the unknowns of the future. Doctors don't know everything, there is no exact science in how things will turn out for your baby. Your baby is a fighter...and you have to learn to be one too. You have to be there for your baby and advocate because at the end of the day that is the best way for you to care for them during their time in the NICU...advocate and be there for your baby. You will know them better than anybody and it is important that they have that voice in their care.




Immaleigha | 28 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Immaleigha

28 weeks

2 pounds 3.5 ounces

‘When I found out I was expecting I was…in shock!’

Immaleigha’s mother was surprised by her pregnancy and had quite the bumpy road to Immaleigha’s premature arrival.

‘I was very scared but prayed my way through it all and baby girl is here…Life since birth feels great. Mommy mode instantly kicked in. I can’t believe I have a baby girl. What I always wanted’

While she had all that she’d always wanted, it was hard for Immaleigha’s mother to leave the hospital without her sweet baby girl. While in the NICU she gained some wonderful wisdom on life with a baby in intensive care: ‘I would tell other moms and dads to remain humble keep their faith, it is not over!’ Pictures of Immaleigha have helped her mother to cope with this experience. She loves being able to look back at photos to remind herself of her baby’s progress when the NICU journey feels challenging.

I would tell other moms and dads to remain humble keep their faith, it is not over!

Immaleigha might be tiny, but she is not lacking in accessories. Dressed in floral, adorned in bows, and she is even flaunting the tinyest purse! While the pregnancy and her early arrival may have been a surprise, these doting parents are clearly so in love with their little lady.

Emery and Nora | 32 Week Preemie Twins | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Emery and Nora

32 Weeks • 3 Pounds 7 Ounces

“Twins do not run in our families, so we were shocked to hear we were pregnant with spontaneous twin girls.

The pregnancy was going great with no complications until week 30. My blood pressure started to rise but the doctors kept telling us that everything looked great and we could expect to delivery closer to 36-38 weeks.

Week 32 hit and we learned I had severe preeclampsia and fluid on my lungs. When we went to the hospital we were told the goal was to stay pregnant for at least 2 more weeks, but as more tests were done, the goal changed to staying pregnant 2-3 days and ultimately our twins would be born immediately.

We had the twins via emergency c-section less than 24 hours after going to the nurse triage for what we thought was a simple checkup. It has been a hard road for me as the mom because my body clearly failed the girls and couldn’t carry them any longer, but thanks to our faith in the Lord and the greatest friends and family, we’ve stayed strong and are determined to bring home 2 healthy girls as soon they are ready!”

Piper | 29 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Piper

29 Weeks • 2 Pounds 11 Ounces

“I have always wanted to be a mom... I started babysitting when I was 12 years old and was a live-in nanny during the summers while I was in college.

I always thought it would be easy to get pregnant and that I would have a picture perfect pregnancy, delivery, etc. Well, I was certainly in for a surprise! It took us almost a year to get pregnant, then I had a pretty tough pregnancy and ended up going into pre-term labor at 25 weeks. I was in the hospital for 4 days (during Christmas) then was sent home on bed rest.

I was home for 3 weeks and went back into labor at 28 weeks and found out I was 2cm dilated when I got to the hospital. I was given another round of steroid shots and magnesium. We found out I had a partial abruption and the baby could come within hours. I was only 28 weeks and completely terrified! I accepted I was going to be in the hospital for the long haul and prayed my baby girl would hold on a little bit longer...

I ended up making it 6 more days in the hospital and then my daughter decided to make her debut. I had a c-section (the spinal did not work, so I unfortunately felt the entire thing- ouch!). Piper came out a fighter and has been powering through her NICU stay.

This has been an emotional rollercoaster, but each day gets better knowing we are closer to bringing her home!”

Wade and Waylon | 26 Week Preemie Twins | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Wade and Waylon

26 Weeks 2 Days

1 pound 10 ounces & 1 pound 14 ounces

“We had been trying to get pregnant for 3 years and were about to start the IVF process, and then found out we were pregnant with identical twins! The pregnancy was going well with doctor appointments every two weeks to keep an eye on the babies. We decided to have the boys' baby shower at 26 weeks, so we would have time to get the nursery ready. Well, the boys decided they wanted to come see what they got at their shower...I went into labor 2 days later!

I really had no clue I was in labor but knew something was wrong. I went to the hospital and they confirmed I was in labor and immediately started meds to try to stop it. Well my water broke and I was taken in for c-section. My sweet redheaded baby boys were born at 2:01pm & 2:03pm. This was by far the scariest day of my life. Looking at them now at 11 weeks old (37 weeks gestation), they are perfect.

Still in the NICU but doing great!! I could not be more thankful or impressed with the nurses and doctors. I thank god every day and I'm looking forward to being able to take my boys home.”

Logann | 25 Week Preemie | NICU Portraits | Charlotte, North Carolina | Krista Gantt Photography

Logann

25 weeks 1 day • 1 pound 10 ounces

"Logann was a surprise from day one. We weren’t “planning” on having another child as we have 3 and lead a fairly active life. The day I found out was a whirlwind of disbelief and honestly, some fear as I questioned if I would be able to have energy and the ability to give everyone what they needed.

Logann is teaching me many new lessons on a daily basis about love, strength, and that it’s ok to take it slowly. I’ve never been one for extreme patience but this sweet girl has a tremendous amount of strength and overall guiding me through this journey of patience and love."

“I daydream and long for the day this sweet girl comes home and joins what I affectionately refer to as our circus of love and shenanigans. Logann (Tiny Might) is part of a big beautiful and loving family which includes her sister Lilee(8), Liam (6), Lyla (3), Mom, Dad, and two 100 pound pound labs.”

Rigdon's Story

This is a story I wanted to share for a while, but it never felt like the right time. Today is Rigdon's birthday, so what better way to kick of the blog for 2018 than sharing about this preemie and his super sweet family! You've probably already seen many of these images on an old post (Remembering Rigdon), but this time they are accompanied by his entire story from beginning to end.

Rigdon's mom was willing to write her version of Rigdon's life story, and even found writing about it therapeutic. I can't even begin to understand the emotions Liz and Alan went through over the past few years, especially now that I am expecting a son of my own. I am so happy she shared this with me months and months ago, and I am thrilled to share it with you today. If you have a preemie or have lost a child, make sure to comment with your experience, emotions, and encouragement for this family.

If you want a sneak peak into Liz and Alan's next chapter... check out Bennett's Birth. Although Rigdon can never be replaced, this family was recently blessed with another healthy baby boy! 


Rigdon’s Story

 

 

"Though some days eternity can feel like forever, I know we will see and hold him again."

 

 

 

"Alan and I had always planned on having children. We never anticipated entering into the ‘infertility club,’ and we kept that part of our lives pretty private as we went through all sorts of procedures/testing, but that was our reality, and it was tough. I remember at one point tearfully praying that IF we were blessed with a child, I would do my best to never take them for granted, because I would know what a miracle he or she was—I had no idea how that prayer would be answered, but felt assured that child or no child, everything was going to be ok. I could never have imagined the miracles I was about to witness!

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We had been trying to get pregnant for a couple of years, and had undergone three IVF attempts by the time Rigdon came into our world. He was decidedly our final attempt through IVF, and we could not believe when we got word that we were going to have a little one! In fact, I don’t think I actually let myself believe it for many many weeks.

When you go through failed fertility treatments, you learn the art of being ‘cautiously optimistic.’ I didn’t share the news until about 20 weeks into my pregnancy, when I finally felt like it was ‘really happening,’ and I allowed myself to just enjoy it. That was a little short lived. The pregnancy was full of its own drama, and I had two episodes of heavy bleeding where I thought “there is no way our baby made it through that!” Both times, I remember sitting in anticipation, paralyzed with concern, waiting for the ultrasound, and both times, weeping with joy when we heard that heartbeat and saw him wiggling around as if to say “I got this. I’m not going anywhere.” I knew from the beginning he was a strong soul. The strongest…

I had just gotten home from my shift in the ER on Jan 21, 2016, and was getting ready for bed, when my water broke. I was completely stunned. I had just started feeling better with the pregnancy symptoms, and had barely started to feel movement; I couldn’t really process what had happened and honestly, I had no idea how our world was about to change. I think I subconsciously, and rather naively, thought “we got this, things are fine, our little guy has shown us he’s strong before,” and off to the hospital we went.

The next few weeks of bedrest are kind of a blur. I had ruptured at 21 weeks and 6 days, and there were a lot of conversations about the lack of much needed amniotic fluid for his lung development in particular, as well as the risk for infection. I had a couple trips to L&D, but the contractions would calm down, and the 3 weeks we were able to keep him in were filled with hope for just one more day for him to grow. We had goals to reach! Our first goal was 24 weeks; we never got to the next one.

During that time, I started thinking back to many years ago, when I had been serving as a missionary, representing our church in the Caribbean. One day when I was struggling with feeling tired, lonely, and dejected, one of the leaders of the mission there said to me: “We can do hard things.” There was more, but that phrase has always stayed with me. And that became our motto. We were feeling tired, often lonely and often dejected, but our little family, our little boy; whatever he would face -- could do hard things.

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3 weeks after my water broke, February 11th, Rigdon joined our world. He was a tiny 24 weeker, but was bigger than I thought he’d be. He weighed in at 1 pound 10 ounces and was just 12 inches long…but he looked so strong. The delivery was a bit traumatic, but I remember the seconds after I delivered him as being a moment where time stood still. The room was filled with people ready to act in our behalf, and as they held him there in front of me for a few seconds, despite the voices around me, I heard absolute silence. There was no cry. He couldn’t. I could just stare at that little boy for seconds before they whisked him away to intubate and stabilize him. I couldn’t see him, but I remember vividly the words the NICU team spoke as they surrounded him across the room. His heart rate was dropping,..they got him intubated..his heart rate improved.. The NICU doctor came to my bedside and tenderly placed his hand on mine and told me they would let me know when I could come see him and that they needed to take him then. I remember our exit from L&D without my babe in my arms. That was probably one of the first moments I truly realized the ‘loss’ we were experiencing, and would continue to experience time and again.

Our entrance to the NICU, was unlike our little tour beforehand, because now OUR little baby was in there. This was now our home. I remember seeing him in his little isolette, and wishing so badly that I could hold him; keep him safe, but also being terrified that I’d break such a tiny perfect thing if I touched him. Every experienced hand that worked with him seemed ‘too rough’ and I knew pretty quickly that this little boy now totally owned his momma. I was going to be there every minute possible to witness his life, support him, and protect him. I felt a growing weight of advocacy I had not understood before. We never wanted to leave! (Though I am sure many times the staff wished we would) We grew more and more obsessed with him everyday and if we wanted to be with him, then we had to be there in the NICU, so we were there in the NICU. We didn’t care to be anywhere else.

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He is our miracle. He lived in that NICU for 7.5 months (230 days) and our sweet NICU family had become a quite literal family. They will forever be a part of us! They were there to witness every moment by our side. Every milestone was a miracle for us… The first time he opened his eyes, (His eyes were still fused shut when he was born; it was a literal miracle to watch them open in front of us), his attitude with always wanting to kick his feet out of his swaddle, the first feeding, the ridiculously long baths because I was so new and he was so tiny, when he finally weighed enough to wear clothes, moving to an open air crib, and of course, the way he loved to kangaroo. Those are such precious memories that are now shared with people who understand the significance of those miraculous moments in our lives. With as hard as it can be to have the hospital be your home, there are some joys unique to the experience, including having witnesses to every single accomplishment your baby achieves… all rejoicing with you because of how much they love him.

For every moment of pure joy, it seemed we had multiple moments of anguish. Like most parents, we held to the belief that if he could ‘just get through’ whatever had knocked him down this time, then we could get back to working towards healing and home. Every day was one more day of progress, but there were a lot of setbacks. There were nights we stayed by his isolette all night, for fear of missing our last moments with him. There was rejoicing in the morning when he had made it through the night. There was worsening eye disease until he finally required laser surgery. Then there was recovery. There was infection on top of infection and so many blood transfusions, medications, and drips… all within the first 3 or 4 months of his life. We worried that his body never seemed to have time to grow those lungs that were so very weak and underdeveloped. That became our focus of concern. He didn’t seem to be improving as expected.

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Rigdon was growing, but his lungs were struggling. He had been tried on CPAP 3 times, and the final CPAP trial lasted 5 days. He was re-intubated on Easter Sunday at 6:45 pm. I remember clearly the moment he was reintubated, because I heard his tiny little lamb like cry as they removed CPAP to place the tube. I only heard his little voice for seconds, and then there was silence. I never heard that little cry again.

He couldn’t seem to get off the vent. Then came the tracheostomy. We had spent months hoping he would grow enough not to need a surgical airway. It scared us—not because we couldn’t care for it or him, but because of what it meant. We were so scared about his future, but knew that our miracle baby had fought hard to get to where he was, and we were going to keep supporting him. As long as he was fighting, we would fight right there with him. We chose faith over fear, and he got his trach and G-tube placed in June. There was about a week of recovery with paralytics, pain medicine, more drips, and, of course, infection. It unfortunately, was a setting we had become familiar with. Nothing came easy for our sweet boy, but if I could define strength, it would be him.

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When he came back from surgery, I was mesmerized by his now fully visible face and spent hours staring at him in his crib. I could now see all his features without tape and tubing getting in the way. He was a perfect angel baby! I became instantly grateful for the trach because I felt I was experiencing an entirely new Rigdon! The weeks leading up to the decision were so hard; filled with heartache and a thousand questions—I had no idea I could feel like I was getting back somehow a more ‘complete’ baby, when I was so focused on what I felt was being taken away. The days and hours always felt long, but time was still passing. We watched many many babies come and go from our little part of the world. We went through cycles of sadness, anger, and hopefulness as we went through multiple ‘roommates,’ often feeling a little left behind. Our tiny little miracle boy had somewhere along the way turned hefty, which served as a reminder of our seeming lack of progress, but also, growing right along with him was the deepest, greatest love we could ever imagine. In being honest, we definitely went through moments of jealousy for others’ babies and the progress they were making, but also found great joy in learning that loving and rejoicing with others did not diminish our own situation or triumphs. And that was a big lesson to learn.

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Through our extended time in the hospital, I would say my best advice is that we simply cannot compare! That’s the hardest part of having to go through this experience, I think. We want to know the end from the beginning; we want to know how it all turns out, and we find ourselves living for/in the future instead of in the miraculous moments right in front of us. It’s human nature to want to know what’s going to happen, so we try to find others that are ‘just like us’ and somehow use them as a mental guide. We try to compare our struggling child to others’ good outcomes to bring us comfort because “so-and- so went through this and they made it home—so we will, too.” It’s something even well-meaning friends do. “I knew someone that had a baby just like yours, and he/she is completely healthy and you would never know it!” Although, that may be the likely outcome and is meant to give hope, you just never know what is in store for you, and that takes its toll on the heart. Life becomes a constant struggle of balancing hope, realistic expectations, and the ever present gnawing sadness that accompanies watching your baby fight such a battle, and wishing you could do something more.

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We had to learn that each and every baby is so individual; there are no comparisons. Nobody can tell you for certain what your outcome will be. You just go through it with faith and hopefulness and take things one day at a time, finding the miracles in everyday moments. We had to learn to “let Rigdon do Rigdon.” Learning not to compare helped us to be able to focus on our own little one and rejoice in His triumphs, regardless of what others were doing the next pod over. It also helped us to be able to reach out and form friendships with others because we no longer saw them as “comparables,” but as individuals with their own individual struggles, fears, and joys. Those friendships have meant so much because a natural byproduct is even more people to love our babies! Of course, there were hard days where we didn’t want to be the friendly veterans, we didn’t want to be in the NICU ‘club.’ Nobody does. We just wanted our turn to take a healthy baby home… But overall, I could never fully describe the love and sacredness of our time experienced within those walls. That was home for us.

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Discharge day finally came! I cry every time I think about that day. Truly, there was no better day than the day we took him outside those hospital walls to come home. The amount of equipment required for him was daunting, but was completely overcome by our excitement and desire to watch him soar. He was as stable as possible, but not in a great place to be honest, and we really felt like if we could just get him home where he belonged, then he would begin to really thrive. We dreamt of our walks outside, getting him up from his crib in the next room, playing by our big window on the floor of our living room... we didn’t want to take a single moment for granted. We wanted him to experience being surrounded by the peace of being home, and we will cherish forever the time we did have to give him that.

Rigdon loved being home. We knew it. And We loved it even more! That’s why it was so heart wrenching to see him start to decline. He required more support and we had to experience many parents’ worst nightmare of having to resuscitate your own baby. We knew we had to go back. About 3 weeks after getting him home, we went back to the hospital, this time at LCH where his pulmonologist was, and we were there to stay.

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We went to the PICU, and spent the next few months watching Rigdon continue to fight infections, and make small progresses only to be followed by large setbacks. He had been put back on the hospital ventilator and could not seem to tolerate a home vent again. We often said that we hated having to be there, but there was also no place we’d rather be. We were blessed, once again, with wonderful care-- such great love and dedication to our babe. We do not doubt for one second that he was cared for by the best throughout his life, and offered all there was to offer in his behalf.  Still, it was hard being away from our NICU family, who knew him so well, and having to develop new relationships with the PICU staff. Turns out, it just added to our growing tribe… I remember it was so hard to try and explain how and why Rigdon had changed and was worrying us. They didn’t know him yet, but that didn’t take long to remedy. He stole their hearts pretty quickly and he had a brand new audience to swoon over his every smile, hand hold, and expression. We saw him laugh for the first time there! It actually scared us at first because the alarm on the vent would go off from the increased pressure, but when we realized he was laughing, I mean, you can’t describe the swelling that happens in your heart! He even had his first and only taste of baby food there (pears). We felt our little room at LCH had become a special place, made special by his sweet spirit, and people loved to come and spend time there with him. (That made it just a little easier, knowing he was being well loved for the times when I couldn’t be there.)

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The holidays approached and we knew he was nowhere close to where he needed to be to return home. As had been the case many times before, we were told he was not progressing as expected. We weren’t sure why he wasn’t improving, but kept holding on to the hope that he could overcome his BPD with more time. That timeframe kept getting longer and harder for him. Christmas week was actually a really good week for him, and I think that was a blessing meant just for me. We had a beautiful family Christmas and even took our first family photo to include our surprise miracle baby #2! After being told this would likely never be a possibility for us, we just knew this was another miracle in our lives, and a purposeful blessing given to us for a reason.

Two days after Christmas, Rigdon started to really struggle, and by New Year’s Eve, he was in really bad shape. He had never been like this before. Things were different this time. He was placed on paralytics, the oscillator, multiple sedation and pain meds, and for the next couple of weeks, we watched for him to show us he could get through this once again. The months had been difficult, but he always seemed to have just enough strength to get through. He’d never quit fighting, but this time seemed to be too much for his body. We had been living in his room with him during those final weeks, and when he passed, we held him as tightly as we could physically hold him, as we watched our beautiful miracle baby boy slip away. We found out we were having another baby boy just days before Rigdon passed away.

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There is no replacement for our perfect angel boy, and there is a constant throbbing and loneliness for him that I am having to learn to live with now in my heart, but I can say with certainty that his life was full of purpose and we wouldn’t trade a minute of our time with him. He has forever changed us (I hope for the better), and our family, and pretty much everyone that ever knew him. We didn’t get the outcome we hoped for, but the influence of his life continues to unfold in front of us daily. I can say we never took him for granted, as I prayed so long ago, and am so grateful for every long day and night with him… every memory still feels so raw, so fresh in my mind. There is no “moving on” when it comes to missing your baby.  Only moving forward. And sometimes, like Rigdon, I feel I am doing that on a sliding backwards slope. BUT – there is meaningful purpose in his life and that helps as we find the joy of having learned to love so deeply and the blessing he is and forever will be to us. I hope to be able to help other moms feel some sense of comfort knowing that I know, with faith and through experience, that we really can do hard things, whatever the outcome, and it will be ok."

Update on Jack | 23 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography

Jack's mom sent me an update on his progress!  If you missed him on the blog, click below to see what he looked like shortly after he was born at 23 weeks.  Then read below to see what his mom had to say about his progress.

Jack is doing well! He has been up and down on his feedings. He gets very close to full feedings and then his gut needs a break so we start back very low. He does show cues of hunger and rooting and LOVES taking a bottle. He is 2200 grams now! We are working towards him being in a crib, but don’t want to overload him with a ton of work to do on his own. He is down to low flow cannula on .0125 Os. He is not quiet ready to be off oxygen, although he pulls the cannula out constantly so we resort to taping it to his nose.

Jack | 23 Week Preemie | NICU Portraits | Charlotte, North Carolina NICU Photographer | Krista Gantt Photography

 
Jack was expected to be born in April 2017, he had other ideas. We were working and living on job assignment in Indiana and drove to Charlotte for a few days to spend time with family for the holidays. The night after we got here, Jack arrived as well. From the point of water breaking, it took 12 minutes until Mini Man graced us with his presence. It has been such a huge roller coaster since we got here. A lot of one step forwards and two steps back.

These photos were taken a while back, but Jack is definitely making progress.  Click here to see how Jack is doing!